Learning To Be Okay With Me and My Chronic Illness

Learning To Be Okay With Me and My Chronic Illness

Remember when you were younger and someone would ask you, “what do you want to be when you grow up?” A typical response would be an astronaut, cowboy, policeman, actress, teacher or princess. However, for me, because of my chronic illness, my response was a bit different.

Don’t get me wrong; I had a dream of being a veterinarian until I was in middle school, but I soon realized that I wasn’t the stellar math student that I needed to be. After this realization, I decided a career change was needed at age 13.

Unlike the other children my age, my arthritis meant that I had to take my health in to consideration when thinking of my future. I couldn’t go on to be Taylor Swift’s tour manager, a Disney princess, or a ballroom dancer on Dancing with the Stars (all of which, at one point in my life, I really wanted to be). But these were all unrealistic careers for someone diagnosed with Juvenile Rheumatoid Arthritis at the age of 6.

From the moment I was diagnosed, I was always included in conversations about my health. I’m not talking about making medical decisions at age 6, but my family was always open about my health, medications, side effects and decisions I would have to make regarding my future. For example, I knew from an early age I would need to think about obtaining a stable career that provided me with health insurance to cover my medical needs. Not something typical 13 year olds think about, but to me, that was normal. These were the cards that I was dealt and I chose to make the best of my hand.

Finding A Career Path I Love

I come from a family of educators and becoming a teacher was something that I more or less fell in to. It met all the requirements (health insurance, sick leave, summers off) that I was looking for, but my heart wasn’t in it. I knew that I loved helping others from my time volunteering at kid’s arthritis camp. This experience led me to pursue counseling, where I could help others deal with many of the same problems I’ve had to overcome.

To be honest, I never thought I would be where I’m at today. I have always viewed myself as “the sick one”. There was a voice in my head always telling me that because I had so many health problems I wouldn’t be able to amount to much.

One of my favorite memories is the moment I told my family I was accepted into the Mental Health Counseling program at Florida State University. In that moment, I was so proud of myself for proving that I could succeed despite the obstacles I faced due to my health. To further prove I could succeed despite my health I didn’t even disclosed I had a chronic illness until the end of my first semester. I wanted people to treat me as “normal” and show myself that I was strong enough to accomplish my goals.

After disclosing my health battle, individuals with disabilities soon became a topic I was passionate and vocal about. So much so, that I’m certain I still get eye rolls from my colleagues every time I bring it up. However, ever since I disclosed my disability it’s something that I’ve never struggled with again. I now see it as an opportunity to advocate and raise awareness for everyone with disabilities. I was excited about my new field of study because I knew I found a field I was passionate about that would also provide the flexibility I need when it comes to my health.

My Chronic Illness Allows Me To Better Empathize With Others

Having a chronic illness allows me to truly empathize with others in a similar situation. It also creates opportunities to advocate and bring awareness to the challenges related to disability, trauma and the use of service dogs (see my article on my service dog here). However, even with all the positives, there have still been days where I’ve wanted to drop everything, run away and open a book store on the beach somewhere.

Managing Stress With A Chronic Illness: The 8-8 Rule

A lot of studies have shown that increased stress in someone with a compromised immune system can lead to flare-ups of inflammation. My Mental Health Counseling program does not lack in the stress department. It often becomes a game of how to balance work, school and rest at the same time. And that’s without having a social life!

People often ask me how I do it all. They typically laugh when I tell them my 8-8 rule: I don’t do work before 8:00 am or after 8:00 pm. That time outside of this window is me time. I’ve learned that in order to stay as sane as humanly possible and avoid getting sick, I’ve got to have time to watch TV, dance in my living room, lay on the floor with my dog and most importantly, sleep.

I’m in bed asleep by 10:30 pm each night because no sleep for me means a sick, cranky, moody Kara and nobody likes her. Even if you’re not in school, I suggest implementing a rule like that. You’ve got to take care of yourself, even if that means learning to say no.

Remember that it is okay to go at your own speed and understand that you don’t need to compare yourself. These are still a work in progress for me too, but I remind myself that no matter how fast or slow I go, I’m still headed in the right direction.

Keep in focus why you’re doing what you’re doing. This one is a bit easier for me because I was the kid who grew up with friends who didn’t understand what it was like to have IV treatments or take 10 pills a day. When I remember why I’m doing this, I remember my own experiences and those of the kids I worked with at the kid’s arthritis camp. On my bad days, I think of their resiliency and that pushes me forward.

Learning To Be Okay With My Chronic Illness And Myself

Learning to be okay with my chronic illness and myself is something that I’ll never stop pursuing. I will continue my journey through my experiences inside and outside of work and school. Pushing myself to reach my educational goals and chasing opportunities to see who I am as a person, reflecting upon those experiences and using them to guide how I interact with others. Accepting my condition and learning to thrive within it has allowed me to pursue work in a field of which I’m truly passionate about.

While I may never get to be Taylor’s tour manager or have the winning dance routine on TV, I still get to go to concerts and dance down the aisles. In life, it’s about finding what makes you happy and learning to dance despite your circumstance while taking care of yourself in the process.

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Kara Dingess

karadingess@gmail.com

Kara Dingess is a JRA advocate, passionately raising awareness for individuals with disabilities and individuals with service dogs. When she isn’t spending her time as a doctoral candidate in the Counseling and School Psychology program at FSU, Kara loves hanging out with her service dog Adele, watching the latest Netflix show, and dreaming of retiring at Walt Disney World. She writes her own blog, "Ribbons, Bows, and Hospital Bracelets” and hopes she can make a difference in the lives of others living with chronic illnesses.

Paula Traylor

Gislaine

Loved your post and feeling inspired by your words. It’s so hard to disclose it to others, not because I’m selfish but because I do want people to love me and respect me for who I am not for my condition.